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In aims to provide interconnection of publications in international scientific journals using Digital Object Identification - DOI, our editorial office incorporated the journal "Social aspects of population health" into international reference system CrossRef.
Since 2016 DOI will be assigned to all scientific articles published in our journal free of charge.

Also DOI will be assigned to all articles published in 2014 and 2015 free of charge as well

ORGANIZATION OF CARE FOR CHILDREN WITH ORPHAN DISEASES IN MOSCOW: PROBLEMS AND OPPORTUNITIES ACCORDING TO THE SURVEY OF PARENTS

Monday, 25 December 2017

DOI: 10.21045/2071-5021-2017-58-6-6

Vitkovskaya I.P.
Research Institute for Health Organization and Medical Management of the Healthcare Department of Moscow, Moscow

Contacts: Vitkovskaya Irina, email:
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Information about author:VitkovskayaI.P., http://orcid.org/0000-0002-0740-1558Acknowledgments. The study had no sponsorship.Conflict of interests. The author declares no conflict of interest.

Abstract

Significance. The problem of care organization for
children with rare (orphan) diseases is a universal one. The World
Health Organization (WHO) notes that none of the 27 member States of the
European Union can offer treatment for the entire spectrum of rare
diseases [17], while orphan diseases account for 35% of deaths during
the first year of life, for 10% of deaths within 1-5 years of life and
12% of deaths within 5-15 years of life [15]. Development of the system,
an integral component of which is involvement of parents will
contribute to early detection, treatment and rehabilitation of children
with rare (orphan) diseases. In Russia this system is yet to be tuned as
evidenced by the Government Order No. 1839-R as of 31.08.2016, that
approved the "Concept for developing early care until 2020". In this
regard, evaluation of the system of care for children at the level of
Moscow as a subject of the Russian Federation and participation of
parents of the patients will allow to identify the existing problems
from the perspective of the medical service consumers and make timely
corrections.

The purpose of the study: to analyze opinion of parents
of children with rare (orphan) diseases about availability and quality
of medical care in Moscow.

Materials and methods. Analysis of opinion of parents
of children suffering from rare (orphan) diseases was conducted at the
Reference center for congenital genetic diseases, genetic abnormalities,
and other rare orphan diseases of the Morozov Childrenâs City Hospital
of the Moscow Healthcare Department. The opinion survey included 158
parents. Research tool: a specially designed questionnaire consisting of
69 questions. Object of the study: family with a child suffering from a
rare (orphan) disease. The awareness evaluation criteria included
quality indicators, defined by the number of correct answers from the
options and their quantity, in % (know /donât know). Data were processed
in the Statistica 5.0 (Statsoft, USA) program and Microsoft Excel.

Results. In Moscow, the following things have a
negative impact on availability and quality of care to children with
rare (orphan) diseases: doctors insufficiently inform parents about
health prognosis of the child; low capacity of facilities (lack of
genetic testing within the system of Compulsory Health Insurance); lack
of services needed by the patient (services of psychologists, speech
therapists, speech pathologists, physiotherapists, physiatrists,
specialists in physical therapy) in the individual rehabilitation
program; the need to retain paid medical services.